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onaalbizu.bsky.social
Traducción al español de la definición y criterios de la #encefalomielitismiálgica por Ramsay (1990)

#severeMEday
@asociacionpem.bsky.social
@europeanmealliance.bsky.social
#EUHealthPolicy #DisabilityRights #BiomedicalResearch #Neurology #InvisibleDisabilities #PublicHealth #WorkforceCrisis #EMEA
asociacionpem.bsky.social ONG PEM @asociacionpem.bsky.social · Aug 8
Creemos conciencia de la gravedad y seriedad de esta enfermedad,aunque en todos sus grados,especialmente en los más graves.Por ello,compartimos esta traducción de la definición de la Encefalomielitis Miálgica por el Dr. A. Melvin Ramsay que podéis descargar en nuestra web:
ongpem.org/novedades/ca...
ongpem.org
August 8, 2025 at 6:42 AM
eanm.org
📢 Introducing the EANM Advocacy Training Programme designed to equip nuclear medicine experts with skills, knowledge and confidence to engage with EU policy.

👉 Apply by July 31: https://eanm.org/eu-global-affairs/policy/advocacy-programme/

#NuclearMedicine #EUHealthPolicy #Advocacy
July 3, 2026 at 7:00 AM
onaalbizu.bsky.social
Alem Mathees I remember you and thank you for your success in the FOIA against the PACE TRIAL.
A turning point in the scandal of #MyalgicEncephalomyelitis

#SevereMEday
#EUHealthPolicy #DisabilityRights #BiomedicalResearch #Neurology #InvisibleDisabilities #PublicHealth #WorkforceCrisis #EMEA
August 8, 2025 at 9:36 AM
onaalbizu.bsky.social
Un problema de DDHH y un desastre económico y de salud pública creciente.
La #EncefalomielitisMiálgica roba educación, carreras profesionales e independencia.
#SevereMEDay #EUHealthPolicy #DisabilityRights #BiomedicalResearch #Neurology #InvisibleDisabilities #PublicHealth #WorkforceCrisis #EMEA
August 8, 2025 at 7:33 AM
ehc-news.bsky.social
📢 The EHC Public Policy Review (PPR) is out! Covering #EUHealthPolicy developments from Jan 2025 to Jan 2026, it breaks down what matters most for the #BleedingDisorders community — pharma reform, #EHDS, #HTA, #CriticalMedicinesAct, EU Biotech Act & social care. 📖 buff.ly/vIIDSak
February 19, 2026 at 1:30 PM
correlationnet.bsky.social
Civil society is the backbone of EU health. We urge Member States: restore #EU4Health operating grants & secure a strong #MFF budget for health in 2028–2034.

👉 Read the full statement here: buff.ly/cUNCaY2
#EU4Health #MFF #EUHealthPolicy #CivilSociety #EUCivilSociety #CivicSpace #PublicHealth
December 15, 2025 at 12:00 PM
komoptegenkanker.bsky.social
(2/4) 📣 Samen met 9 andere Belgische gezondheidsorganisaties roept #KomOpTegenKanker de federale regering op om zich achter een fundamentele hervorming van de Europese geneesmiddelenwetgeving te scharen. #EUHealthPolicy
April 30, 2025 at 3:44 PM
eupha.bsky.social
The #EU4Health programme faces a €1 billion cut in #MFF review! Sounding the alarm of the shocking impact this will have on #EUHealthpolicy & citizen's #health, the #EU4HealthCSA have written to #Belgium Prime Minister
eu4health.eu/content/uplo...
Visual with logo saying the EU4Health Civil Society Alliance calls to reverse a shoking draft decision taking 1 billion europes from the EU4Health Programme
January 29, 2024 at 11:30 AM
stanna-ccri.bsky.social
🇪🇺 How can Europe build a stronger rare disease research ecosystem? At the EU Parliament, Ruth Ladenstein (St. Anna CCRI) called for sustainable infrastructures, trial networks & better alignment of science and policy. 💪 #EUHealthPolicy #ResearchEcosystem
April 30, 2025 at 8:58 AM
ipopi.bsky.social
How can EU policy better respond to the needs of people living with primary and secondary immunodeficiencies?

Because rare does not mean invisible — and not-so-rare still deserves attention.

#IPOPI #PIDForum #PIDs #SIDs #RareDiseases #EUHealthPolicy #HealthPolicy #PatientAdvocacy
June 17, 2026 at 10:37 AM
maryjguy.bsky.social
At @euhealthgov.bsky.social webinar tomorrow lunchtime, we are delighted to welcome Dr Chloé Berut, who'll be presenting work on #digitalhealth and #EUhealthpolicy.

For more information, and to register:

events.teams.microsoft.com/event/d11cf8...
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Microsoft Virtual Events Powered by Teams
events.teams.microsoft.com
June 24, 2026 at 8:11 AM
gasteinforum.bsky.social
Article 57 of the revised EU pharmaceutical legislation requires market authorisation applicants to disclose any direct public funding for drug R&D. Transparency is essential to support #FairPricing discussions. Join us at #EHFG2025 to explore policy options 👉 bit.ly/408RXG6

#EUHealthPolicy
August 5, 2025 at 8:30 AM
ipopi.bsky.social
IPOPI is proud to take part in the high-level meeting on “Building a Research and Innovation Ecosystem for Rare Diseases”, hosted at the @europarl.europa.eu.

💡 It’s time for patients to be central actors in shaping a healthcare ecosystem that works for all.

#IPOPI #RareDiseases #EUHealthPolicy
April 29, 2025 at 11:31 AM
epha-eu.bsky.social
EPHA welcomes the Infectious Disease Alliance (IDA) as a member! IDA envisions a world with a significantly reduced #InfectiousDiseases burden, where everyone, regardless of location, has access to prevention and treatment.

#PublicHealth #EPHAMembers #EUHealthPolicy
July 4, 2025 at 7:42 AM
onaalbizu.bsky.social
#SevereMEDay #EUHealthPolicy #DisabilityRights #BiomedicalResearch #Neurology #InvisibleDisabilities #PublicHealth #WorkforceCrisis #EMEA

By @illustratorinterrumped

"A letter obtained by deceased ME advocate Craig Maupin through an FOIA request (Freedom of Information Act request) was sent ...
August 8, 2025 at 9:19 AM
asociacionpem.bsky.social
#Neurología #DiscapacidadesInvisibles #CrisisDeLaFuerzaLaboral #EUHealthPolicy #BiomedicalResearch #Neurology #InvisibleDisabilities #PublicHealth #WorkforceCrisis #EncefalomielitisMiálgica #ConcienciaciónEM #AcabarConElAbandono #MyalgicEncephalomyelitis #MEAwareness #EndTheNeglect #pwME
August 8, 2025 at 7:48 AM
eanm.org
📣 Last chance to register!

The Policy Workshop at #EANM25 is designed for academics, clinicians & researchers who want to connect science with European health policy.

📆 Oct 6 | Barcelona
⏳ Deadline: Sep 11
👉 Apply: eanm.org/eu-global-af...

#EUHealthPolicy #NuclearMedicine
September 5, 2025 at 12:10 PM
eanm.org
📣 Reminder – Free Policy Workshop at #EANM25 🇪🇺

Academics, clinicians & researchers: help shape the future of nuclear medicine by connecting science with policy.

📆 Oct 6 | 14:00–15:00 | Barcelona
👉 Apply: eanm.org/eu-global-af...

#EUHealthPolicy #ResearchPolicy
August 26, 2025 at 1:35 PM
catherinefeore.bsky.social
The last Inside EU Health for this week
#TobaccoandVapesBill #SmokeFreeGeneration #TobaccoFreeFuture #YouthProtection #Vaping #EUHealthPolicy #Rybelsus #DiabetesCare #NovoNordisk #GLP-1 #MaternityLeave #PaternityLeave
April 23, 2026 at 1:29 PM
digestivecancerseu.bsky.social
Yesterday, DiCE attended the meeting of the EU Health Coalition, which focused on the EU BioTech Act and its potential to shape the future of patient innovation in 🇪🇺.
#DiCE #BiotechAct #EUHealth #CancerPolicy #ClinicalTrials #DigestiveCancers #EUHealthPolicy
March 18, 2026 at 8:13 AM
cancerpatientseu.bsky.social
📢Patient organisations must be at the table as co-architects of the policies that shape their lives.

At CPE, we want to ensure the cancer patient voice is heard where decisions are made.

➡️Read more: www.linkedin.com/feed/update/...
#patientvoice #cancercare #healthyeurope #euhealthpolicy | Cancer Patients Europe - CPE
Thank you to the European Patients'​ Forum and Novartis Europe for bringing this important conversation to life. The message from the room was clear: patient organisations must be at the table, not a...
www.linkedin.com
March 16, 2026 at 2:39 PM
acertainlib.bsky.social
Italian Deputy PM Salvini again wastes his nonexistent political capital on presenting a bill to withdraw from the WHO. Why must we be saddled with these people? #supportwho #euhealthpolicy @who.int
January 24, 2025 at 9:50 AM